My Jouney With Dystonia

In 2001 after being a pastor for seven years I began to have problems with my voice. I did not realize that I was in the beginning stages of dystonia. God led us to move to Michigan and to become members of Beth Haven Baptist Church. I worked in the office supply business, and volunteered at the Church. I continued to have some strange problems that got progressively worse. In February of 2006 the problems progressed so that my driving ability was affected. I was laid off and began receiving unemployment while I looked for something that I could do. In March of 2006 I went to my family doctor to see if we could find out what was going on. The first neurologist I went to told me I was faking and recommended that I be committed to a psychiatric hospital. Thankfully my family doctor refused this form of treatment and sent me for a second opinion. Unfortunately for me no other neurologist in my area would see me because of the previous diagnosis, and my refusal to seek psychiatric help. I did find a neurologist that was willing to see me, but he is two hours away. It was here that I learned that I also had PNKD like my mother. Paroxysmal Nonkinesigenic Dyskinesia is a form of Dystonia that can be passed from one parent to a child. It was this time that I found out that we were expecting our third child. My neurologist has told me that each of my children has a better than 33% chance of developing this disorder. My dystonia affects the complete body. I tremor, twist, and become paralyzed. Sometimes only one of these things happens during an event. Most attacks last 45 min to an hour. During an attack my muscles fight each other and pull or tare themselves. I have little notice when one is about to happen, and have made the decision with my doctors not to drive anymore. As time goes on the events have gotten more extreme.
In 2007 I was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). My platelet count is very low. I am usually around 40, but the last time I was tested I was at 20. I was told that a normal low is 140. Basically my platelets are larger than normal, and my kidneys destroy them. This has limited my treatment options. Thankfully I began to receive Disability in 2007
In 2008 I was placed on oxygen, on an as needed basis. I have began to struggle breathing during attacks, and have stopped breathing. Also during 2008 my appendix ruptured which led to emergency surgery, blood transfusions, and five days in the hospital. Since I have full body tremors I was so scared of eventing during the healing process. Thankfully I had a couple of low event weeks. I have little strength anymore. I use a cane for support to walk outside, and a wheelchair when I get out to stores. It usually takes as long as 24 hours to regain mobility after an event. Because of the ITP pain relief options are limited, and I usually just live with it.
As far as family history goes my mother and aunt both have dystonia. My little brother turned 30 not to long ago and is showing some signs of adult onset as well. Further, back I have several relatives that had epilepsy or were diagnosed with strokes or other disorders with effects like dystonia. My family is Native American Indian and the medical records only go so far back.
September of 2008 marked a drastic change for me and my dealing with dystonia. I asked to go to the University of Michigan to see if there might not be any other treatment options. My neurologist agreed and I scratched the money together to go. They were able to both start and stop an attack, and recommended for me to continue with the sinement and start a little valumn. The also recommended removing as much stress from my life as I could and that I no longer be left alone or just with the kids. Easier said than done. For some reason not explained to me my neurologist tole me he would not longer see me based upon some questions the UofM had about his care for me. Since I had refused to commit myself into a mental health facility I am told that no other neurologist in West Michigan will see me. Frantic calls to my family doctor led him to take over my care, and meds. He kept the sinement the same but put me on a low dose of adivan instead of valumn. Medical expediences are becoming overbearing and we find ourselves truly praying for our daily bread. I have run out of meds lately and have missed some meals and ate some things I would have thrown away. It has been cool to see how God has provided for some needs though.
Well it is May and 2009 has been interesting. I found out the the U of M labeled me with Psychogenic dystonia and that was why my neurologist dropped me. I have been to see a physiologist who said that I was neither malingering (trying to play sick for the benefits) nor was I psychogenic. My insurance has demanded that I go back to the U of M one more time before they will look at Mayo or anything like that. My struggle with ITP has gotten serious and I have had one infusion this year and an probably going to have another in a few weeks. My family doctor has put me on baclofin to try to help with the full body spasms. This after having one to two a day. Thank God they have helped. I am still struggling to find someone who will take my dystonia seriously and try to help.